Feng Yongshen, Ng Tsz Ying Christine, Lu Dali, Chan Lily Man Lee, Li Junyan, Chau Pui Hing, Kwok Jojo Yan Yan
School of Nursing, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China.
Department of Child Mental Health, Shenzhen Longhua Maternity and Child Healthcare Hospital, Shenzhen City, Guangdong Province, China.
J Autism Dev Disord. 2025 Jun 4. doi: 10.1007/s10803-025-06877-x.
Parenting children with autism presents unique challenges globally, particularly in China, where cultural factors and an underdeveloped service system can add complexity. This study aimed to explore the parenting experience and challenges of parents raising an autistic child in mainland China.
A qualitative descriptive design using individual semi-structured interviews. Using purposive sampling, participants were recruited in mainland China from April to July 2023. Interview data were transcribed verbatim and analyzed using thematic analysis.
Twenty-five Chinese parents (nineteen mothers and six fathers) of autistic children were interviewed. Four themes emerged: (1) diminished quality of life due to the caregiving role; (2) fears and worries regarding children's development; (3) experiences of isolation and loneliness in the caregiving journey; and (4) parental behaviors and their impact on child development.
The findings suggest that effective support for individuals with autism extends beyond individual-level interventions, necessitating the integration of family care and robust community support systems. Cultivating autism-friendly communities - where understanding, acceptance, and resources are readily available - is crucial for a more inclusive and supportive environment that addresses cultural stigma, empowers caregivers, and ensures access to appropriate services.
在全球范围内，养育自闭症儿童给家长带来了独特的挑战，在中国尤其如此，因为文化因素和欠发达的服务体系会增加复杂性。本研究旨在探讨中国大陆自闭症儿童家长的养育经历和挑战。
采用个人半结构化访谈的定性描述性设计。采用目的抽样法，于2023年4月至7月在中国招募参与者。访谈数据逐字转录，并采用主题分析法进行分析。
对25位自闭症儿童的中国家长（19位母亲和6位父亲）进行了访谈。出现了四个主题：（1）因照顾角色导致生活质量下降；（2）对孩子发展的恐惧和担忧；（3）照顾过程中的孤独感；（4）家长行为及其对孩子发展的影响。
研究结果表明，对自闭症患者的有效支持不仅限于个体层面的干预，还需要整合家庭照顾和强大的社区支持系统。营造对自闭症友好的社区——即理解、接纳和资源随时可得的社区——对于营造一个更具包容性和支持性的环境至关重要，这种环境可以消除文化污名、增强照顾者的能力并确保获得适当的服务。
